Referat fra AE-møte i Tyskland, juni 2013

Aniridia Europe Meeting

Report

June 1st – Morning

Aniridia Europe President, Rosa Sánchez de Vega, briefly introduced the meeting then gave the floor to the participants that presented the situation of their own country and of their national association, when existing.

Around the table there were people from Spain, Germany, Italy, United Kingdom, Switzerland, Belgium, Russia, Bulgaria, Denmark, Sweden, Norway.
There was also a medical doctor from Egypt who asked to participate to the meeting; her interest for the disease was welcomed by the group.
Then the scheduled presentations were exposed.
Rosa Sánchez de Vega talked about Aniridia Europe in 2013, presenting the history, objectives, activities and future perspectives of the federation, in the frame of EU Rare Diseases policy and ongoing projects such as patients’ registries.
The group discussed the possibility of building a European registry for aniridia patients and it was said that at present there is a need to wait for the results of some important developments on this issue at EU level; in the meantime, it was decided to build a contact list of patients in order to be ready when there will be a concrete opportunity of building a registry.
Barbara Poli, AE Secretary, presented Protocols and Guidelines for Congenital aniridia: How and why, explaining the characteristics of these documents and relating on the two existing experiences: the Spanish Protocol on the management and care of aniridia patients and the Italian Guidelines for the Management of congenital aniridia.
Neven Milivojevic explained the policy chosen by Aniridia Europe of slowly but surely building a long term financial and organizational sustainability. He strongly advised participants to build an association in their countries because our previous experiences prove that a formally recognised organisation can have a stronger voice towards medical professionals and healthcare institutions. Some raised the problem that their doctors discourage them about forming an association, because they think that it more appropriate to rely on the existing organisations, such as the national blind unions. AE Board made clear that Aniridia Europe and aniridia national associations are neither in opposition nor in competition with the blind unions or any other existing association. Instead, our objective is to focus on the specific need of aniridia patients connected to the specificity of the disease (knowledge, management and research on the disease), while we cooperate with other associations and institutions on all the matters we have in common.
It was suggested by Rosa Sánchez de Vega to include a chapter on this kind of advocacy in the document that is being developed on how to start a national association.

June 1st – Afternoon

The participants moved to the Auditorium to attend to the Scientific Symposium on aniridia together with the German patients.

After the welcome by Prof. Dr. B.Seitz and Prof. Dr. B. Käsmann-Kellner, Rosa Sánchez de Vega presented Aniridia Europe to the German participants.
The lectures were as follows:

June 2nd – Morning

The morning was divided in three sessions.

In the first session there were some short presentations:

Neven Milivojevic explained that RD associations very rarely meet the criteria for getting funds; at the moment only the Spanish and the Norwegian associations receive some funding from the State.
Aniridia Europe received some funding from Eurordis in order to organise meetings to build the federation; this is a very important support, but it cannot ensure ordinary functioning.
AE has a sponsorship agreement with a private company, HumanOptics; the agreement makes clear that we do not recommend in any way to use their products as AE does not have the capability to offer direct medical advice or guidance.
This amount is not very large and we are keeping it to make a reserve to guarantee the financial sustainability of the 2014 Conference.
At the moment, this is the only money we have and it would be very good if full and affiliated members could help AE in finding philanthropy sponsors.
As for regular small tax-deductible gifts: the laws for tax deduction are those of the country of the giver, so the possibility to deduct a donation has to be investigate in every specific case.

Katie Atkinson talked on behalf of Jenny from UK and Carry from Spain, who propose to create a European group on WAGR. There is already an International WAGR 11p13 group in USA and every year they organise a meeting, but it is always in America and this is too far for people from Europe. The idea is to have a meeting in Europe too.
Jenny and Carry wish to create a group, to promote research, to cooperate with other organisations such as AE, to have a protocol, and to create a scientific panel. Participants are required to transmit this information on their national networks through mails, websites, social networks and so on.

Elena Tsoneva e Ognian Petkov explained that the Bulgarian association has applied for a project directed to build empowerment for families affected by aniridia. The partnership ensured by the Norwegian association will give the project more possibilities to be accepted.

Barbara Poli gave some information about the state of the art of the 2nd European Conference on Aniridia, scheduled in Italy in September 2014.

During the second session some members of the Editorial Staff (Espen Vangsnes, Katie Atkinson, Barbara Poli and Denice Toews-Hennig) left to have a meeting on the website, that is at the moment undergoing revision.
The rest of participants stayed with the President and the Vice-President and discussed in deeper proposals about participation of the different countries’ associations or reference persons.

The final session gave the participants the opportunity to wrap up and to express their willingness to work on aniridia research and projects at national and European level. Everybody expressed their congratulations and thanks to the German association, and to Denice Toews-Hennig in particular, for the organisation of the meeting and for the warm hospitality.